This blog is dedicated to discussing the ups and downs of a family with a child who has Mitochondrial Disease. A blog seems to be a good way to share our experiences as a family and to hopefully connect to others with similar experiences.

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Tuesday, September 16, 2008

Tonight, another scare, but one that we handled (surprising ourselves) like veterans. We checked on Roxie around 9 pm because she was still awake after an hour in bed. She had thrown up all over the place, and we bathed her, tried to get her to take some medicine, and put her back to bed this time on her blow up mattress in our room. An hour later (we were watching her), she went into status epilepticus (a seizure that doesn't stop on its own). Unlike in January, we were much more calm about how to deal with the situation. We got out the diastat, gave it to her rectally, and five minutes later, she was out of the seizure and sleeping in our arms.

Of course, given what happened in January, we didn't want to take any chances, so we woke up McRae, took her to a neighbor's house down the street, and drove Roxie to the ER. This time, she didn't have another seizure, and she didn't have RSV or pneumonia to cause any complications. We took precautions and asked for a chest x-ray and a precautionary IV to be put in her arm. It was scary as you'd expect, but we were so much more in control, knowledgeable, and empowered this time. Presbyterian Hospital staff were champs as always, and after removing the IV and giving us some sage advice, they allowed us to head back home three hours later. We think she must have a 24-hour virus of some kind that she picked up at school perhaps.

The poignant moment of the night happened when Kate awoke McRae to tell her Roxie was sick and that we had to take her down the street. McRae said "I don't want Roxie to cry" but she stayed positive and seemed calm. We'll be spending some time today explaining things to her. It was very sweet, and I am so proud of her.

Thursday, September 11, 2008

Roxie will finish her 3rd week at Metro School this Friday. Her transition to Kindergarten has gone better than expected and she seems to enjoy her time at school (for the most part). She is in a classroom with 6 children and 3 teachers. They have all kinds of adaptive resources (Roxie had a special chair for circle time, a special chair for the cafeteria, a stander, a walker, and loads of special adaptive leaning toys and equipment). They have music, art, trips to the media center, play outside on the adapted play equipment, swim nearly every week, and more. I couldn't be more pleased. And to boot everyone in the school that I've met seems dedicated and excited about what they do. It is an impressive place where I feel comfortable leaving Roxie, even on day one.

After waking the kids by 6:50am and speeding through breakfast and getting ready to go, McRae and I get to school with Roxie at 7:55. We sit with her in her classroom until 8:30 so she can do her therapeutic listening. This is a program which involves listening to modified music for 30 minutes twice a day using special headphones with the hope of improving Roxie's sensory challenges. She usually enjoys listening for a few minutes and then throws the head phones off. An adult has to sit with her for the 30 minutes to encourage/gently force her to leave on the headphones. Phelps and I are hopeful that this program will have some benefit for Roxie over the next few months, but it is a challenge to find the time and remember to do this twice a day. And sitting still for an hour total each day is an exercise in patience in a Buddhist sort of way. It is hard not to want to get up and start laundry, check email, or answer the phone. But now that I do the morning listening session at school there are not many distractions that require my attention and I can be on her like white on rice making sure the headphones stay on. McRae enjoys looking around the classroom while I sit with Roxie. She loves Metro, too and has taken a keen interest in the media center. So much so that after our 5th trip there the media specialist created an account for her to check out books. This is very exciting for a 3 year old! She is especially impressed by their expansive collection of Berenstain Bears books.

I think one of the biggest challenges for Roxie as she began Metro was getting used to spending so much time sitting up. At home and at ES UCP she spent lots of time on the floor (on her back), which is her favorite place and requires little effort on her part. But I think she's already adjusting to these new demands, although she did bite her Miss Becky one day as she attempted to put Roxie back in her wheel chair (apparently she's had enough sitting that day). All this hard work at school does make her tired and when I pick her up at 2:45 she's usually ready for some down time (out of her chair) and wants her shoes and braces off. And in the evening now she's now asleep within 5 minutes of being put to bed around 7:45, so no more banging on her blinds for 30 minutes like she would do all summer long when we put her to bed. We hope for continued success at Metro and for soon seeing the outcomes of all the work Roxie does there.

Meet Roxie

Roxie turns 9 in November of 2011. Although she has had to work hard her entire life to learn basic skills like sitting up or using her hands, she is a happy little girl. Roxie has Mitochondrial Disease which has resulted in profound hypotonia, epilepsy, sensory integration disorder, cortical vision impairment, and fragile health. She loves music, her family, and interacting with other children.